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Navigating the Pathway to Diagnosis and Care for Individuals with Autism Spectrum Disorder

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Navigating the Pathway to Diagnosis and Care for Individuals with Autism Spectrum Disorder Navigating the pathway to diagnosis and care for individuals with Autism Spectrum Disorder Nicholas Fears, Ph.D.; Karolina Kata, M.B.S., OMS-IV; Shannon Chang, OMS-III; Monica Nguyen, OMS-II; Abhinaya Ganesh, OMS-III; & Haylie Miller, Ph.D. July 20, 2019 Our Mission at UNTHSC: – Partner with stakeholders in the ASD community – Provide resources for individuals/families in need – Study sensorimotor function in ASD – Understand co-occurrence of ASD and other developmental disorders/conditions What to Expect Today: – Multiple short presentations that are all related – Some research data, some clinical evaluation – Lots of information in a short period of time – Many passionate, enthusiastic young scientists! ASD Diagnostic Criteria Social Communication Restricted, Repetitive Patterns & Social Interaction of Behavior or Interests Deficits in social or emotional Stereotyped motor behaviors reciprocity (hand flapping/rocking) Deficits in nonverbal communicative Insistence on sameness/routines behaviors (gestures/expressions) + Restricted interests abnormal in Deficits in developing, maintaining, intensity or focus & understanding relationships across multiple contexts Hyper- or hypo-reactivity to sensory (imaginative play/friendships) input or unusual sensory interest AND… Symptoms present in early development, cause clinically significant impairment, and are not better explained by intellectual disability or global developmental delay. Redefining Autism Spectrum Disorder (ASD): – Complex set of neurodevelopmental symptoms – Not just social or psychological – “whole body” – Not just a two-dimensional spectrum (low/high) Low to High Functioning Symptom domains present or absent Degree to which symptom domains are affected Low to High Functioning SymptomSymptom domains domains present present or absent or absent Degree to which symptom domains are affected Low to High Functioning Symptom domains present or absent Degree to which domains are affected Low to High Functioning Symptom domains present or absent Degree to which symptom domains are affected How components of each domain are affected Whole-Body Disorder • Will require a culture shift at all levels! – Community surveillance – Provider assessment and diagnosis – Intervention planning and outcome evaluation – Scaffolding to support social, healthcare, daily living, employment contexts that will all be affected by non- core symptoms of ASD “Autism Pure” vs. “Autism Plus” Nicholas Fears, Ph.D. Autism is Autism Plus • Nearly all individuals with Autism have Autism Plus – >95% of individuals with Autism have one or more co-occurring conditions (Soke et al., 2018, JADD) – Majority of individuals have 4 or more co-occurring conditions (Soke et al., 2018, JADD) Topple®, Pressman Games Common co-occurring conditions • Sleep issues • GI disturbance • Motor Problems • Seizure disorders • Metabolic disorders • Cognitive Differences • Anxiety, depression, • Immune system • Sensory Sensitivity loneliness, dysfunction aggression • Growth Differences Pic 1 Pic 2 Pic 3 Heather Weston CDC Impact of co-occurring conditions • Impacts both patients’ and families’ quality of life (Moyal et al., 2014, Paediatr Drugs) • Parents experience considerable problems: – combining daily activities with care – have financial problems – suffered from depressive mood (Hoefman et al., 2015, JADD) Topple®, Pressman Games ASD and DCD • Recent changes to diagnostic criteria allow for ASD to be co-diagnosed with Developmental Coordination Disorder (DCD) (DSM-V, 2013, APA) • 2-7% of children • Problems with development of motor coordination • Delays in achieving motor Picture of happy kid milestones, poor balance, coordination, and handwriting skills – This allows for ASD only, DCD only, or ASD+DCD. – Diagnoses of ASD and DCD are inconsistent, ranging from potentially 1% to 25% (Kata et al., 2019; Kopp et al., 2010) ASD and DCD • How do children with ASD compare to children with DCD on parent reports and standardized assessments of movement? – Developmental Motor Milestones & Developmental Coordination Disorder Questionnaire (DCD-Q) – Movement Assessment Battery for Children (MABC-2) – Beery Test of Visual-Motor Integration (Beery VMI) Pic of Motor Pic of MABC-2 Pic of Beery milestones Johnson & Blasco, 1997, Pediatr Rev. Pearson ASD and DCD • Discrepancies in parent reports – 76% of children with ASD met developmental motor milestones according to parent reports Pic of motor milestones – 92% of children with ASD met criteria for DCD via parent report on the DCD-Q CDC ASD and DCD • Similarities in standardized assessments – 77.88 was the mean standard score for children with ASD on the Beery VMI – 97.5% of children with ASD met DCD criteria (below 16th percentile) on the MABC-2 DCD likely at: 5-7:11yr, 8-9:11yr, 10+yr Below 16th percentile DCD Likely Haylie L. Miller, Ph.D., Gabriela M. Sherrod, B.S., Joyce E. Mauk, M.D., Nicholas E. Fears, Ph.D., & Priscila M. Caçola, Ph.D. Impact of untreated motor deficits • Mental health may be negatively impacted Pic of isolated kid • Children may be more socially isolated Getty Images – Teachers’ report children with DCD having fewer friends (Piek et al., 2005) • Children may have lower self-esteem – Self-esteem may be lower due to fewer social ic of kids playing contacts and friendships (Poulsen et al., 2008) CDC Impact of untreated motor deficits • Physical health may also be negatively impacted Pic of sedentary kid • Children may engage in less physical activity Christopher Furlong. Getty Images – (Cairney et al., 2011; Hamm & Yun, 2017) • Placing them at higher risk for obesity, chronic health conditions, and reduced quality of life Pic of active kid – (Hill et al., 2015) CDC Diagnosis & Treatment • Important complete review of ALL health systems by primary care physician to recognize ASD symptoms (Ellerbeck et al., 2015, Prim Care.) – Treatment options: • physical therapy • gastroenterology Moriarty Physical Therapy • cognitive behavioral therapy • melatonin (sleep disturbances) • speech therapy (Vargason et al., 2019, Autism Res., Carmassi et al., 2019, Front Psychiatry, Gabis, Defense-Netrval and Fernandes, 2016, Codas) Summary of Results • ASD is a complex condition with a wide range of variability in symptom profiles. – Some symptoms might be well-known (social communication) or easily noticeable (sleep and GI issues) – Motor problems might be “overshadowed” by other symptoms (McLeod, et al., 2017) • We need to assess for potential motor difficulties in ASD • We need to include the appropriate health professionals (OTs, PTs etc.) for developing motor abilities in ASD. A multi-center retrospective investigation of diagnostic, referral, and early management pathways for pediatric patients with Autism Spectrum Disorder (ASD) and Developmental Coordination Disorder (DCD) Karolina Kata, M.B.S., OMS-IV1, Shannon Chang, OMS-III1, Abhinaya Ganesh, OMS-III1, Monica Nguyen, OMS-III1, Joyce E. Mauk, M.D.2, W. Paul Bowman, M.D.1,2, Laurie Bailey, Ph.D.2, Tyler Hamby, Ph.D.2, & Haylie L. Miller, Ph.D.1 1UNT Health Science Center, Fort Worth, TX, USA, 2Cook Children’s Medical Center/Child Study Center, Fort Worth, TX, USA Diagnostic Pathways for ASD with/without Co-Occurring Conditions Karolina Kata, M.B.S., OMS-IV Neurodevelopmental Disorders • Presence of motor symptoms in ASD: (Morris et al., 2015; Ozonoff et al., 2008) • Abnormalities of: gait and balance, postural instability, and incoordination (Miller et al., 2019) • Findings are widely documented with standardized motor function tests (Ozonoff et al., 2008) • Current diagnostic practice does not include a systematic evaluation of motor coordination in ASD. (Caçola et al., 2017) • DCD and ASD can be diagnosed as co-occurring (ASD+DCD). (American Psychological Association, 2013) Motor Symptoms • Motor symptoms in ASD: • Motor difficulties significant enough to warrant a diagnosis of DCD. (Caçola et al., 2017; Miller et al. 2019) • The treated prevalence remains low and motor function is often not prioritized in treatment planning. (McLeod et al., 2017) • Early intervention and improved outcomes. (Blauw-Hospers & Hadders-Algra, 2005) Diagnostic Pathways • Evidence-based medicine: • No clear pattern to how a patient arrives at final diagnosis. • There are few published studies examining the details of pathways used for diagnosis, referral, and early management of pediatric patients with ASD, DCD, and ASD+DCD. (Caçola et al., 2017) • Reaching the diagnosis: • Variability in the chain of clinical events leading to diagnoses of ASD, DCD, and ASD+DCD. • Multifactorial provider and patient centered differences → unique pathways for patients seeking care. Diagnostic Pathways Key Questions • Diagnostic path: • How does the classification of the first responsible healthcare provider influence the diagnosis? • How long do families wait to see a specialist? • What is the prevalence of ASD+DCD and which is diagnosed first? • What presenting symptoms are being reported? Methods • Design: • A multi-site retrospective chart review. • Population: • Pediatric patients diagnosed with ASD, DCD, and ASD+DCD in the Cook Children’s Medical Center (CCMC) network, the University of North Texas Health Science Center, and the Child Study Center (CSC) in Fort Worth, Texas. • • Inclusion criteria: • Children ages 0-21 years at the time of first chart entry. • Documented medical or educational diagnosis of Autistic disorder, Autism, Autism spectrum disorder, Pervasive developmental disorder, Asperger’s syndrome, Developmental coordination disorder,
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